This Is MS Multiple Sclerosis Community: Knowledge & Support

[gibbledygook]

Hooray! I shall order this nifepidine stuff on the internet to add to my cornucopia of tablets. I should set up as a chemist!

[SarahLonglands]

I can't post the full article here obviously but I would be very interested in Dr. Wheldon's opinion on this- it seems like it would be a great addition to the regimen.

It appears that David did actually think of putting me on it, but I was doing so well without it he thought there was not really much need. He does see the advantages of certain people taking it, though.

It could be the reason why Statins tend to have some use as an MS therapy, but the people advocating their use don't realise this!

Are you rattling yet G'?

Sarah

[GPlover]

Daunted, how do you detox from Flagyl? I just started my third pulse and just wondering...

Also I don't quite understand something: when symptoms flare up for whatever reason (for me it is mostly when I am on the metro pulse) why does that happen? I thought symptoms are a result of some damage on myelin or whatever. So how can it resolve so quickly and then come back with the next pulse? A damage is a damage...it shouldn't come and go....
Or are these symptom flareups "only" from the bacteria releasing their toxins? But then it is an awful coincidence that the bacteria release toxins on the same nerve that's got the damage? Or have I got this completely misunderstood? (I did skip a few biology classes at school )

My other question is: when is the best time to take acidophillus capsuls during the pulse? I take 1 metro tablet every 8 hours so my body is constantly high on antibiotics. I just think as soon as I swallow the "good guys" they stand no chance to do any good in my intestines because they probably get killed as soon as they hit my stomach.[/quote]

[gibbledygook]

Hi GPlover!

I too wonder what is behind the mechanism of the flagyl induced flareup. They definitely occur to me either during the pulse or immediately afterwards. I imagine that the bacteria concentrate themselves around certain areas which are close to or in the lesions and that as they die off they release endotoxins around the existing lesion but also in areas where lesions may not have yet formed. I imagine that this is what causes the flare-up. However this is speculation based on unproven hypotheses formulated by a complete biological novice/mess!

[SarahLonglands]

Hi Both,

Daunted, how do you detox from Flagyl? I just started my third pulse and just wondering...

I know I'm sticking my nose in here, since the question wasn't asked of me, but 'detox' seems to be the buzzword of the moment. Really your body is perfectly capable of doing this itself, aided by drinking plenty of water, of course and maybe some milk thistle, which I think Daunted uses.

Or are these symptom flare-ups "only" from the bacteria releasing their toxins? But then it is an awful coincidence that the bacteria release toxins on the same nerve that's got the damage?

I think you have got it more or less right there. The metronidizole kills the CPn so is bound to give rise to a release of toxins. This is why the flare-ups don't last. You will probably be both pleased to know that before I got to the stage of intermittent booster doses, these flare-ups had stopped. Now I don't notice any difference when I am taking the stuff and when I am not. The metronidizole does still make me feel tired and weepy, though, but that is in the nature of the drug.

My other question is: when is the best time to take acidophilus capsules during the pulse? I take 1 metro tablet every 8 hours so my body is constantly high on antibiotics

David told me that you don't need to take the metro exactly spaced out in eight hour periods, so what I do is take the doxy/roxy combo all in one go just before breakfast, take the first metro of the day after breakfast, have the second with lunch and the third about seven or eight o'clock, with dinner. Then take the acidophilus last thing at night. I think it is a bit of a myth, to say that you should take everything equally spaced, like the fact that some people say you should never drink alcohol with antibiotics. This only is true with metronidizole.

However this is speculation based on unproven

hypotheses formulated by a complete biological novice/mess!

As David frequently says, there is no such thing as proof in medicine, only evidence, and medicine is full of 'unproven hypotheses', though not usually formulated by a complete biological novice! For instance, do I still need to carry on with the booster doses? Who really knows, but I do because I am so damned scared at the moment of it all coming back.

Sarah

[Daunted]

Daunted, how do you detox from Flagyl? I just started my third pulse and just wondering...

I don't do a very good job of it, for starters. I feel like crap for about 10 days after a Flagyl pulse, and the last one, combined with over-exercising, actually put me in a mini-flare up. I had accompanying flu-like symptoms so I didn't panic, I'm fairly sure it is endotoxins and fatigue causing it; it is already waning.

But what I mean by "detox" is that I use large amounts of anti-endotoxin measures immediately following the Flagyl pulse. Day to day it is very difficult to do this, because you can't take other medications or supplements for two hours prior to taking charcoal, or for 2 hours afterwards.

But immediately after a Flagyl pulse, I take the following:

20 tablets of charocal AND Questran: 10am, 3pm, 8pm
Jarrow "Gentle Fibers" four times a day
Chlorella (loads of it)
100 ounces of water/gatorade per day

I just can't sustain that all the time, but immediately after a Flagyl pulse I do so. If it's not right after a pulse I'm much more likely to just take charocal at night (so that I can squeeze my supplements in throughout the day).

I will post an update at my 6-month mark. I'm just not sure how I'm doing, to be honest. I do have some improvement but it is still hard to say what is sustained. I have an appointment with my neurologist next Monday, so that should be interesting.

[gibbledygook]

Good luck with the neurologist. I too feel a bit like I'm in limbo land as I am not sure that there are any of the longed for improvements which others have experienced. However I must remember that the cessation of a continuous deterioration IS an improvement! This time last year I thought I was going inexorably downhill but now I feel that I have stabilised. Now that should be a major boost. Nevertheless it is slightly disappointing not to find real sustained improvements in any of my symptoms. However I also know that I have a large lesion in my spinal cord and few elsewhere So improvements may never come or at least may take some time (hope springs eternal!).
Anyway, good luck Daunted.

[Daunted]

Well-put; I try to remember this. I had "mild" symptoms to begin with. The worse your symptoms are, the more likely you are to notice improvement- at least I think this is probably true. My primary outcome meaure, if you will, is not developing full-blown MS, so I am in a very different situation than many of those taking antibiotics.

But, symptom-wise, it has been quite a roller coaster ride. About a month ago I returned to jogging and was doing well at incrementally adding time and distance...then I did a Flagyl pulse and I can't imagine jogging for a while, now. Now I'm back on Flagyl (just took a few days off) and I'm having the sensation of being on the deck of a ship, almost constantly. And I'm almost at 6 months of treatment! So it's quite a roller coaster ride.

Keeping track of all of this day-to-day may be a bad idea! I think how I am doing at 6 months (in a few weeks) and at discontinuation of therapy will be most important.

[SarahLonglands]

I try to remember this. I had "mild" symptoms to begin with. The worse your symptoms are, the more likely you are to notice improvement- at least I think this is probably true.

This is very true: I had very actively progressive disease when I started treatment, so was almost bound to show more results more quickly. As I have just posted in the antibiotics section, I could almost feel the disease grinding to a halt, which sounds very silly, but true. Now it is nearly two years on and I certainly have had no new symptoms, but I am still even now experiencing something of the roller coaster ride, with little flare-ups when I try too hard. As for the sensation of being on the deck of a ship, this seems to me to be a very diurnal thing, much worse towards the evening, but somewhat better again after relaxing with a glass of red wine.

So good luck with your next neuro meeting Daunted, and wish me luck in August with my next MRI!

Sarah

[GPlover]

The worse your symptoms are, the more likely you are to notice improvement

But I thought the earlier you start therapy in the disease the better the chances for improvement, because the damage is "fresh" and easier to repair. Consequently if one hasn't got the disease for long then they are not likely to have advanced and very bad symptoms. But if you are progressive for a long time (therefore most likely have bad symptoms) antibiotic therapy might not help at all. But then this is the opposite of the above quote I do not unerstand

[SarahLonglands]

Yes, the earlier you start treatment the better, for certain, but it can also be quite difficult to know how well it is working, because, for instance if you are in the middle of a remission and have no particular remaining deficits, you won't know if it is working until one day you realise that you haven't had a relapse for ever such a long time.

I suppose then the only way to tell would be to have an MRI scan which would show if you have any new silent lesions or not, these being lesions which accumulate without showing any symptoms externally.

If you have been progressive for a very long time, then improvements may be limited, however I had only been progressive for a few years. At the time of starting treatment my disease was very active, so I could feel some change almost at once, in the way that if you have been suffering from a fever, you know when you are past the worst. Sorry for confusing you with that.

Sarah

[GPlover]

Oh ok. It is clearer now. Thanks Sarah for clarifying that and for all your inputs. They are very valuable as you have first hand experience with this regimen and a very knowledgeable husband at home. It must be nice to have that extra security. I think I will send my husband on a microbiology crash course

[SarahLonglands]

You could do worse: There is always a shortage of staff at all levels in David's lab!

[eric]

Can someone please post the exact regimen they are on? Including dosages, times of day it's taken, supplements taken, how much, and times of day? I'm having a hard time finding the info from the many posts here.

Are people taking:

500 mg amoxicillin
100 mg(?) zithromax
300 mg rifampin

All of these TWICE a day? What time?

Then, every 3 weeks, a 5 day course of flagyl, between 1,000 and 1,500mg?

What are people doing to control the yeast overgrowth from the zithromax? Is that the correct amount of zithromax above?

Where can I find the exact protocol laid out by Dr. Stratton or whoever else's protocol people are following?

I couldn't find the explanation for why the high blood pressure med is helpful in this situation.

Are there also links to credible journal articles, etc. on treatment of CPn? I need something credible and that lists the protocol to take to a doctor, if I can find a doctor willing to prescribe it. But I'd like to give it a shot.

With so much info here, I'm having a hard time finding exactly what the meds are, what the doses are, how many times a day, and what other supplements are needed and when to take them. Also why high blood pressure med.

Thanks for your help in setting things out clearly and easily for me or pointing me specifically to the info I'm looking for. My head is getting dizzy trying to sift thru everything.

[eric]

Forgot to ask one more question.

How long is the protocol supposed to be? And is there a weaning off or some follow up treatment schedule too?